Maintenance

This is not in chronological order, just so you know. I still need to write about our CureSearch walk, Interim Maintenance II days 31 and 41 and Disneyland. Be prepared to back track! These feelings are just so fresh and I can't stop thinking about it so I had to write it out.

After a wonderful few days in Disneyland, we had to come back to our reality and get back on track with our treatment of this ugly monster. We had blood drawn on Sunday, November 4th to see if JP was healthy enough to start Maintenance. You see, after you finish all the treatments in each phase there is typically about a 2 week recovery period where counts are usually pretty low but "recover" so you can start the next phase. In this instance, JP needed to have an ANC of 750. (Remember that normal people are usually 5,000.) So Sunday night we call the lab to find out where his ANC is because we had an 8:00 am appointment Monday morning. His ANC is 700. Hmmm... we weren't sure if we were supposed to show up in the morning or not! I called the on-call doctor and she went over his labs and told us there was no way - his ANC was actually 690-something. We decided we'd call in the morning to see what they wanted to do. Once we got ahold of clinic they told us we could recheck his counts or wait 4 days and recheck then. Well Josh's grandpa died on Nov. 1st so we were planning to fly to New York for the funeral on Thursday night and we did not want to leave JP right after he started a new phase so Josh and JP headed to the hospital hoping he made counts. His labs came back at 800 so I found a sitter for Elsie and went to the hospital.

Like I've mentioned before, we are participating in several studies to (hopefully) improve the treatment plans for ALL kids and the main study we are on randomizes patients in their Maintenance phase to see how they respond to treatment, whether higher doses of the medication improves the mortality rate or if lower doses can yield the same results, thus lessening the long term side effects of treatment. Many people don't realize that simply treating cancer can cause serious late-effects - infertility, heart problems, secondary cancers, disabilities, the list goes on. Our hope is that JP will beat this beast and go on to live a normal life. We realize there will likely be late-effects and we can only pray they do not interfere with his ability to live as normal of a life as possible.

Before I got to the hospital they randomized JP. In addition to all the medications he has to take daily and/or weekly, the arm of the study we were placed on involves the lowest dose of weekly oral chemotherapy and Vincristine through his port just once every 12 weeks. When I heard this, my eyes welled up with tears and I couldn't help but to shake with fear. How do we go from weekly/every 10 days of chemo to once every 12 weeks?? Sure, lower doses of the chemo should lessen the likelihood of late-effects but what if the leukemia comes back in between treatments?? Or, even worse, what if it's not enough chemo over the next 2.5 years to rid his body of every single leukemia cell and we end up right where we started, only 3 years later and no further ahead?? I am so terrified of relapse. I don't know if there will ever be a time that I won't worry about it. I sat down with one of his nurses and expressed my fear. She explained that we'll still have bloodwork and clinic visits every 4 weeks so we'd know if something was off. If there is any reason to believe it isn't enough, we would immediately take him off the study and increase the Methotrexate and/or adjust his treatment plan. That made me feel better but I'm still consumed with fear. Cancer is a terrible thing to have to deal with. I know we are incredibly blessed to have "the good cancer" and so many people praying for us and we know the Lord is carrying us through all of this, but sometimes I still feel so heavy with the burden of watching my son fight cancer. How is this fair?